IVIG

Hey everyone,

I had a call from my doctor last tuesday and he told me that he has got me some intragram for christmas. I am having it on monday and tuesday this week. I just want to see if anyone has had any bad side effects from having this drug so i know what to expect and if anyone has had side effects, was it while you were having the infusion or was it a couple of days after the treatment? I haven't had it before so i am excited and a bit nervous all at once.

Sorry Lauren, I can't help you with that one, but I will be believing that it will go well for you.

my first treatment I had an allergic reaction, they had to slow down the drip even more and crank up the benedryl. My first two treatments took 8 hours each so be prepared. Also ask if they will be giving decadron at the same time. There are some side effect from the steroids, but there are lots of studies which show some people get a better reaction from the 2 together than apart. From just straight IVIG I get headaches about 4 days after that are really really bad. Other than that nothing.

One thing you need to remember, Lauren, is that we are all different. Before my splenectomy, I had no problems with it. For quite a while after surgery, I didn't even need it. When I did start needing it again, my reaction was different. I would get sick for the next three days and wasn't much use to my husband. So I asked my hema about being pre-medicated with Benadryl, Tylenol and something else, which I can't think of. I did Rituxan in Sept./Oct. and now my counts are in the normal range.

Good luck with your treatment. I hope it works for you.

Thanks for your replies. I'm hoping I will one of the lucky ones who doesn't have a problem with it. I am leaving soon to go the hospital.

Good luck, Lauren. I hope it goes well.

IVIG is truly not that bad... I have been getting it for awhile, and if that is the only treatment that you need, without having to take steroids or any other drug, you should consider yourself blessed.

Thanks everyone for your comments and advise. I didn't have any problems while having the infusion. I have had some general muscle aches and pains and a headache and some nausea after it, but it hasn't been too bad. I have a blood test on friday, so i will let u all know the results when i get them, does IVIG work quickly?? Also has anyone had a portacath before? The nurse said my hematologist rang and said to remind him next time I see him to talk to me about it, my veins are really small and hard to get blood from and keep IV's in. They had to switch hands mid way through it yesterday.

Well the ivig must be working, i had the treatment on a monday and tuesday the week of christmas and counts went to 36 and then two weeks later they are now at 42, so glad to see it seems to be working.

Nice to hear..

Stay the course - I bumped a little after my first but it wasn't until 9 weeks later that it really kicked it.

I have a portacath. Personally, I think I'm glad I have it. I'll try to list out some pros and cons

Pros:
No more IV's in my arm! - I can move around while getting an infusion much better and can actually do things with my arm afterwards! Before my port I was getting stuck at least 3 times then would have to hold very still while getting infusions so I didn't cause an occlusion. Also I don't look like a junkie who shoots up anymore.
no pain! - for me, now that I've had my port for 2 years (I think) the skin over my port is fairly numb. I don't really feel the needle when it is accessed and only feel a slight pressure most of the time during an infusion. I will caveat this with, this took some time. The first time post port placement that the nurse accessed my port I wanted to punch her. It hurt SO much. That stage really only lasted 2-3 months though.
Minimal scar - I will admit I cried over my decision to get a port. I'm 26 and have always dreamed that I will wear a strapless gown if I ever get married. for the first 3-4 months post surgery I was really self concious about my port scar, but now I hardly notice it and no one else does either, it looks really clean.

Cons:
most of the cons have to do with the surgery itself. I was sore for a while afterwards and couldn't lift weights with that arm for almost 6 weeks. Even now I can sometimes feel it when I'm working out.
upkeep - after rituxan I was orginally experienceing remission of up to 8 months, so I didn't exactly go get it flushed every 4 weeks like they reccomend. Every now and then because of this they can't get a blood return out of my port right away and I have to sit there for 30 min while they use this stuff called 'cath flow' to get it going again. it never hurts, is just frusterating.

Just as a note, I get mad when ppl won't use my port. It's so much more comfortable for me and that's why I got it. However some nurses aren't comfortable with it so I do occasionally get arm draws (yuck)

I hope this wasn't too long and answered portacath questions. Feel free to PM me if you want to know anything else.

Thanks, that has given me a bit more to think about, i have blood tests every two weeks and if the IVIG starts to become a more regular thing, it sounds like the pros outweighs the cons by a lot. I see my hematologist on the 25th of this month, so i'll talk to him about and see what he says.